Als?

[Jeremy90]

I been having whole body weakness cramps twitching all through out my body stiff muscles off balance numb tongue stiff and weak jaws/face muscle not much strength hard to grip on things I have had blood tests mri of the brain all normal seen neurologist yesterday they don’t think I have als cuz of my age and schedule me for emg but I’m completely 10000 million % believe it’s als most symptoms started in the last few weeks what do you all think?

 

[ShiftKicker]

It sounds like you have been cleared of ALS by your doctor, but you don't believe them. There's not any question you seem to be asking here, only a statement you are convinced you have it.

Please make sure to read here: Read Before Posting It contains a lot of information. If you have a specific question that is not answered there, you are welcome to ask here.

 

[lgelb]

ALS symptoms don't all come on as suddenly and in the manner you describe, so I'm 100% convinced the other direction. Thus, I expect the EMG will be reassuring. I would suggest you stay in touch with your internist as the most likely explanation, if anything, is a systemic infection.

Best,
Laurie

 

[Jeremy90]

My doctors have not rule it out she just said it’s unlikely at my age but I have like every single symptom of it I have muscle weakness all over mostly arms hands legs feet my legs feel weird when I walk I have whole body twitching weakness in my face muscles and my tongue is like numb my voice is more softer I been told I’m off balance when I walk I have not fallen yet but seems like that will be soon I have muscle cramps and twitching in my tongue I have had ever blood test only one that really came bk high was set rate test and I have had normal mri of the brain I’m scheduled for emg on the end of the month does this sound like als ?

I will update y’all on what emg shows but I suspect als since I have all of the symptoms not just a few but like every symptom of it

 

[Nikki J]

No but you are having an emg soon that will give you more information. Let us know what it shows and what the doctor says. That is the only thing that matters

 

[Jeremy90]

Will an emg tell if you have bulbar als onset cause my symptoms or worse and was jw if that would show for bulbar onset als and does a abnormal emg always mean als??

 

[lgelb]

An EMG will show if you have signs of ALS, wherever the first signs were. An abnormal EMG can mean many things but the doctors are trained to tell the difference. Did the PCP suggest any further testing to follow up the high sed rate?

As we have said, we don't see ALS in what you have told us. Live your life, because you won't get these days back no matter what happens. Please don't post again until after your EMG, because that living takes place where you are, not here.

 

[Jeremy90]

I had my emg done the dr who did it said he didn’t see any evidence of als but the dr who ordered it ain’t told me anything are I have not seen the results yet my symptoms are getting worse muscle weakness cramps twitching stiffness off balance fatigue all kinds of mucus and saliva in my mouth they only did emg on right leg n right arm when I have symptoms all over could emg tell if it could possibly be bulbar onset als ? Thanks I will continue to update more after I see the dr who ordered it thanks

 

[lgelb]

If the doc that did the EMG said there was no evidence of ALS, you can take that to the bank. It is just the way things work that the doc who ordered the test is the one to put a pin in it.

Yes, in ALS, especially if it were so widespread that you "have symptoms all over," is that many or all muscles tested, even ones that you don't think have issues, will show specific abnormalities on EMG.

You didn't answer my question regarding your PCP and high sed rate, but that is something I would make sure has been followed through.

 

[Jeremy90]

So that would rule out bulbar onset to ? And the neurologist that ordered the sed rate didn’t think much of it she said it was barely high so she wasn’t to concern what could all these symptoms be from cuz my pcp pretty much gave up and said it’s out of his hands that the neurologist needs to figure out the symptoms he thinks it’s neurological thanks for reading

 

[lgelb]

If the PCP punts to the neurologist (was there any specific statement about why they think it's neurological?) and the neurologist thinks you're fine (when you see them), you just might be. Pending any drastic changes that send you back to the PCP, that makes it the time to focus on eating, drinking, exercise, sleep, stress, stretching, etc. which can really help.

Not every set of problems is a disease, but almost every set can be improved with some self-care.

 

[Jeremy90]

Pcp just thinks it’s neurological cause of the symptoms I’m having and he did ever blood test and most of them are normal. I have had neuropathy in the past but they don’t think that’s cause of my symptoms. Neurologist don’t think fine, just want to rule out als. They claim cuz I’m too young, which is false. You can get it at bout any age. They want to blame it on long haul Covid since I got it in January, but most of my symptoms were bk in October.

I don’t agree the dr that did emg claim he didn’t see evidence of als, but they only did right side right arm n leg. My symptoms I’m all over muscle weakness, cramps, twitching. I even have mucus in lot of saliva in my mouth, makes me wonder about als, onset bulbar.

What y’all think?

 

[Bestfriends14]

From the symptoms you listed, I honestly don't think much. Not relative to ALS, anyway. I'm not sure what you have, but ALS does not come on all over the body, in the span of a few weeks. Please, unless you're a neuromuscular specialist, don't be like numerous CIHALS posters, thinking you know more than these highly qualified specialists.

Can ALS come on at any age? Yep, it most certainly can. But the symptoms would be muscle failure, not twitching, plus findings from clinical exams. You've had none of this, so your worries are groundless. That's excellent news! You should be moving on, not focusing on a disease you don't have. That only clouds the path to finding out what IS going on.

Good luck with everything. Do take good care.

 

[lgelb]

There is a lot of territory between "you are not fine/you have a history of neuropathy" and "rule out ALS." As you will have read already in this thread, the hallmark of ALS is specific abnormalities in many if not most muscles tested, regardless of whether you think they are weak or not. So they didn't do the "wrong EMG," even if you had bulbar onset. And if most of your symptoms were more severe in October, or unchanged since, you certainly don't have a progressive disease.

No idea why you are fixated on ALS, which is a club you don't want to join. Ask your neuro where you go from here and rejoice.

 

[Jeremy90]

I have. Had, some of these, symptoms, since, October, does als, come on, that fast ? And does it cause widespread muscle aches ? Sry, to bug. Y’all, again, be. The. Last time, till I tell,you what my, neurologist, says , on my next appointment, since she ain’t said anything about results of emg just the emg dr rule out als again thanks,